A Woman's Journey With Rare Disease

The Scapegoating of Disabled Voices & Activism

I’ve avoided this issue for a long time, but again want to repost Kim Sauder’s work because it opens an important discussion. I know the devastation of suicide first hand. I do not condone that. However, I think the distinction of assisted suicide or assisted death is much different. It’s an individual choice often made when or considered when quality of life is dwindling in the context of terminal illness or other contexts. There are arguments that outside of terminal illness there isn’t a valid reason or that depression is at the root of it. I don’t know that I agree fully with that. Yet, I am open that there might be disabled people who might make this choice for reasons of their own & not just because they are disabled or depressed. I just don’t know any yet in this situation, but I do believe they exist. I wouldn’t assume to speak for them either way though. But I do support the right to make their own decisions. I believe very strongly that if given the choice, people should be able to die on their own terms regardless. I do see the problems where it could be used to exploit or take advantage of disabled people for personal or financial gain so it’s a complex issue for me. It’s not a debate because I see both sides. A lot of this is also exacerbated by the climate of Hollywood as well as accessibility in healthcare. But I’ve had a lot of friends pass with hard & horrible circumstances. Their choice to withhold or stop certain treatments is not suicidal, so why should it be considered if someone chooses death on their own terms in a terminal illness or a disability context if it is for reasons related to quality of life? I only bring this up not to stir the pot or tell people how to feel, but to point out such decisions are not made lightly. I held off on even talking about this for a long time because I didn’t want a debate or argument about how wrong I am to acknowledge some people may make this choice for themselves. Or that I even looked into it briefly to explore how I felt about it for myself so when I was exploring both end-of-life decisions & transplant I could be fully informed as to whether it might be something I would explore if it came down to it. Also to decide how I felt about it. I decided against both times it came up for me to look at, but I reserve the right for others to feel differently & allow them to come to their own conclusions for themselves. As usual, Kim articulates this much better than I could even bring myself to (& I tried several times). I do feel that the book & movie Me Without You is not an accurate representation of either disability or assisted suicide. Yes, I know it’s fiction, but even solid fiction authors research their subjects & plots to bring a sense of realism to their fictional stories & make their characters as strong as possible.

Further, I’ve had my own views completely picked apart & discounted because my disability does result from a terminal disease. But my disability existed throughout my life, invisible before any terminal diagnosis entered the equation. Yet, are not my feelings about my own experience just as valid as any other counterpart? It doesn’t negate the fact I’m disabled. I bring this up to have a civilized discussion about the two subjects, not to be dismissed because my situation happens to fall in the terminal diagnosis “camp”.

I really wish I could stop talking about Me Before You, but it keeps being a source of topics that require discussion. At least this time I can leave behind the book itself, I will instead try and tackle some of the things that have come out of the disability community’s backlash against the novel and film.

In my original post on the book entitled Why are You Complaining? Some People Actually Feel that Way. I tried to take on the all to common defensive argument that as long as some people actually experience certain things or opinions, any and all fictional representations of those experiences is acceptable. I wrote,

Here’s the thing, there is a big difference between actual human people having feelings about their actual lives and experiences of disability (which I’m not here to criticize) and a fictionalized account written by someone who isn’t disabled and…

2 thoughts on “The Scapegoating of Disabled Voices & Activism”

It is a discussion for those involved in the process. When Hollywood propagates the idea that the disabled would rather die than live as a disAbled person, it leaves me breathless. Already, we are often marginalized in society without being pushed even further to the curb.